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Day 6 With Questions

buzzkiss

By buzzkiss
in Coping with Celiac Disease

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buzzkiss Newbie
buzzkiss
Posted

I've been having stomach cramps, diarrhea, constipation, fatigue, bruising easy, lower back pain, etc. for about 6 years. I went to several doctors and lots of tests later no help. I was told I had chronic constipation...but every time I took the miralax, senna, or whatever else they told me to take it would just make things worse. Finally I went to get tested for food allergies, they said I didn't have any allergies and my blood test for celiac came back normal.

I finally went to my family doctor for something else and told him about my frustration with my stomach problems. He thought it was a gluten intolerance or celiac. He told me sometimes the blood test will show a negative result even if you have an intolerance. So he suggested I go on a gluten free diet.

After I started the diet my stomach cramps stopped immediately. I had a little diarrhea on day 3 but then I've been feeling fine until tonight (day 6). I went out to dinner with some friends and ordered from the gluten free menu. But one of the side dishes wasn't on the menu, the waitress said it came with all the meals. It had sausage in it and I told her I didn't think I could have it, but she said it was gluten free. But 30 minutes after dinner I started having stomach cramps and diarrhea.

So my question is....was it due to dinner or is this normal during the first few weeks? Did I just get glutened??? This is so confusing.....

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eatmeat4good Enthusiast
eatmeat4good
Posted

It could be either one.

My first few weeks were up and down a few days of each.

I tried eating in restaurants and ordering gluten free but inevitably I got ill right after.

So finally no more restaurants.

Then I started to heal.

It has been 4 months and those ups and downs with unexplained D might be due to other food intolerances as well.

Dairy, soy, corn, fructose, nightshades...any of these can become an issue shortly after going gluten free.

I dropped soy, then nightshades, then very reluctantly dairy.

It depends on the person. Very few of us have just gluten to avoid. Sorry but it seems true.

Congratulations on being 6 days gluten free. It has made a world of difference to me. I hope it will for you too. Sometimes we have to be patient with the "episodes"

heatherjane Contributor
heatherjane
Posted

I've been having stomach cramps, diarrhea, constipation, fatigue, bruising easy, lower back pain, etc. for about 6 years. I went to several doctors and lots of tests later no help. I was told I had chronic constipation...but every time I took the miralax, senna, or whatever else they told me to take it would just make things worse. Finally I went to get tested for food allergies, they said I didn't have any allergies and my blood test for celiac came back normal.

I finally went to my family doctor for something else and told him about my frustration with my stomach problems. He thought it was a gluten intolerance or celiac. He told me sometimes the blood test will show a negative result even if you have an intolerance. So he suggested I go on a gluten free diet.

After I started the diet my stomach cramps stopped immediately. I had a little diarrhea on day 3 but then I've been feeling fine until tonight (day 6). I went out to dinner with some friends and ordered from the gluten free menu. But one of the side dishes wasn't on the menu, the waitress said it came with all the meals. It had sausage in it and I told her I didn't think I could have it, but she said it was gluten free. But 30 minutes after dinner I started having stomach cramps and diarrhea.

So my question is....was it due to dinner or is this normal during the first few weeks? Did I just get glutened??? This is so confusing.....

I would guess it was the restaurant. You'll find restaurants can be hit or miss, even if they have the gluten free menus and appear to take precautions. Sometimes the staff is uneducated, and sometimes they have bad prep practices in the kitchen.

My advice would be to take a break from restaurants for a while until you get the hang of things and understand how your body reacts to gluten. The healing process can take a while, and it's normal to feel bad before you feel better (as may on this board can attest). This diet, and learning how to maneuver through a gluteny world, has a steep learning curve. Don't let it stress you out; just take each day as it comes.

buzzkiss Newbie
buzzkiss
Posted
  • Author

Thank you both for your comments. I feel much better today and hope I won't have another episode but who knows. Again thank you.

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      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
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    • rei.b
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      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
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